Thursday, November 22, 2012

When MS Gets Agitated

The very word says it all, doesn't it?

"Agitate". Could be the phonemic structure of the 'dj' sound followed by the crisp 't' sounds that make a slight grinding sensation on some tiny nerve in my head. Like a nail file. Or something.

Over the past few weeks, I really don't like the way I've been 'feeling'. It's nothing that I'd traditionally be able to pinpoint, because I've run the full inventory. I can see just fine, aside from a slightly annoying nystagmus when reading tiny font. Mobility's good. Hearing's on point. Cognition is solid. Even the ol' bladder is holding it's own - pun intended. I give thanks to the Lord each day for these blessings and take none for granted.

So what's the problem? Well, it's taken a few weeks and at least 3 combustions for me to finally figure it out:  Agitation.

A new source of noise has been added to my work environment. It isn't a loud or shrill noise. You know what it reminds me of? A particular sound an Occupational Therapist I worked with used in small group therapy sessions for children with neurological differences. She would play a track of a man's monotone voice, which spoke a series of words that did not form sentences, at low to mid-range volume. She would then ask the children to play games together, answer educational questions, etc. They would become highly agitated...not by the games or her questions, but by trying to function through the nonsensical recording she used as background noise. Her answer to my question of what the goal of her treatment was in using this method? "To help them overcome their agitation in social situations." To which I said, "in what social situation is there an intermittent, monotone, nonsensical, sound occurring while you're trying to complete a task?" She said, "you'd be surprised!" We had a good laugh over it, and I have to say she was totally right...I am surprised.

I am mentally fatigued by the time I get home, not due to the work I perform, but due to this noise. By the end of the day, I'm ready to combust. By the end of the week? I combust. Sometimes, it's happened in front of others. And it makes me feel absolutely awful. I repeat: Absolutely. Awful.

I don't want to be this person. For years prior, I've been referred to as the 'most patient person', possessing that 'of a saint'. Where'd that go, for goodness sake? Because by Wednesday, the 'saint' has left the building.

But you know how we roll - those of us with super cool neurology - we compensate! So that's what I'm going to focus on. Compensating. Coping. Not combusting. Because people can't possibly understand the mechanisms behind a combustion...and it just makes me look like...a bad person. I'm not that. I don't want to be that. Ever. I want to reflect Christ in all I do. I consciously strive toward that goal each day. And I can't be like Him if I'm ready to slam my face into my monitor by 1pm.

Note to self:  Slamming face into monitor  portraying the woman I am in Christ.

I think I'm going to try a sound machine with white noise. And if that doesn't work...

I'll put on a face mask and go for it?

Tuesday, November 6, 2012

Taking MS to The Voting Booth

Election Day!  What a beautiful privilege 'the right to vote' is.

Tonight, I decided to take my son along with me to experience it in all its glory. You see, most kids his age would give anything to meet their favorite athlete or musician. My son? Wants to meet our local District Attorney, our State Representative, and folks in Washington. He's all government - all the time. He was beyond thrilled as he excitedly perched himself in the passenger's seat and stared ahead in wonder as we turned the corner and saw...this:

Initially, I joked that it appeared as if we were in a parade, but I was wrong. Parades MOVE. This? Did not. My bladder called. I didn't answer...

About half an hour later, my son and I traded 'sitting in the car' for 'standing out in the cold parking lot'. Emphasis on 'cold' and 'standing' as in 'standing completely still'. MS decided to show up to the party.


Summer is not nearly as difficult for me as winter (or super cold autumn). When I get cold - cold enough to shiver - I begin to vibrate. If I dare to look down at the feet I eventually cannot feel, I get that uncomfortable cascade of electrical short circuitry through my legs and ankles. So there I was...standing in the cold parking lot, vibrating-but-not-feeling, praying to God that I would not trip or fall in the cattle chute-esque line, again ignoring the call from my bladder, asking God to help me *not* pee in line ('cause I keep it classy!) when, all of the sudden...

My son took my hand and said, "'re freezin', Mom! Let me have your hands. I'm warm."

Ever since he was little, he just knew. And, though he's now a teenager...he still knows.

Pressing the buttons was fun when my finger decided to twitch each time I extended it. Thankfully, the buttons were far apart and I simply bent my finger and pressed the selections with my knuckle.

I'm home and comfortably nestled under blankets. I'm still vibrating, still keeping my head nice and level so as not to incur unwanted electricity, and still regaining feeling in my feet...but I cast my vote with my son at my side.

Add this night to the list of things that MS can't take away.

- my God
- my faith
- the love of my family
- experiencing the genuine care in my son's face as he warmed my hands

...rock it out: